Accepting the challenges...

It occurred to me late last night...during my usual 3am period of anxiety and introspection, that it has been a year since River was diagnosed with autism...or "on the ASD spectrum" (a term we hadn't heard of before). The past twelve months have been busy. We have had the monumental task of going from almost complete ignorance of autism and the therapies associated with this disease, to negotiating the system of consultants and interventionists, speaking the ABA (Applied Behaviour Analysis) language, contacting the various agencies that offer free services, finding specialists for occupational therapy and speech therapy, dealing with funding issues and the MCFD (Ministry of Children and Family Development), and getting used to different people being in our home virtually every day of the week. We have been lucky in that we hired two exceptional young women as River's Behavioural Interventionists. They have been reliable, hard-working, fun, and they genuinely appear to care about River. It helps that he is adorable, of course! We also feel good about the agency that we hired to develop and oversee River's intervention program. Mark and I have been up and down. At the same time that we notice and remark on how far he has come in a year, we worry all the time about what his future will hold. Will he be able to experience the pleasure of friendship with his peers? How will he be in school? Will he have a romantic relationship? What type of job will he get?

As he gets older his autism (i.e., the "untypical" behaviour) appears more pronounced. Or rather, the difference between him and his peers seems to become more obvious. As is his relative disconnection from other children and other people in general (and we are lucky that River is actually quite connected and engaged with us). His communication is progressing, but it is still very delayed. He is considered "high functioning" and we feel fortunate. I know there are parents of children with autism who desperately seek a cure or look for a reason that their child has this disease. Whether it's diet, MMR vaccinations, dairy products or something else.There are many people out there making money and misleading these parents. It may be that a cause is found. But I still think acceptance is a healthier way to go, particularly for the child. I was reading an interesting discussion with Temple Grandin in which she states that one-on-one early intervention is the key towards a "normal" happy life for children with autism. Understanding the child and helping them develop is more important that looking for a cure, or "fixing" them.

We have experienced a variety of reactions when we tell people that River has autism. A common (and I think well-meaning) reaction is to tell us that he doesn't "look" or "seem" autistic. Or someone will tell us about how their child did this or that at River's age, the implication being that he will "grow out of it". Someone will tell us that they know-someone-who-knows-someone and that River "isn't that bad". I suppose the truth is that unless you walk in our shoes then you cannot know the extra challenges that a child with autism brings to your life. And there are many. Of course, there are certainly joys. River is happy and smart and his "quirks" can be cute and charming. We would not have River any other way. He is who he is and he is a very special boy. And to quote Kate Bush's refrain from "Bertie" (a lovely song about her own son), "You bring me so much joy, and then you bring me more joy".